Hip Dysplaysia Support Group #2

[Miss.September]

I'll keep my fingers crossed for you Karma that it is an MRI you get sent for. I'm surprised that the receptionist doesn't know what your surgeon prefers to do after surgery. Feel free to PM me at any time too, I can give you my details if you PM me.

[furgurnie]

Hi guys, thanks for your messages.

Emma is doing really well, we got home yesterday afternoon. It is so good to be out of the hospital!

We went to Monash Children’s Hospital in Clayton and our Dr was Ton Tran (head of paediatric orthopaedic surgery). Our experience was a positive one, the Dr’s and nursing staff were fantastic.

Emma had an open reduction as expected. Her spica cast is plain plaster which we will write all over and keep once she’s out of it. She was first on the list, so we didn’t have to wait long until she was called for her op. She handled the 6 hrs fasting without any grizzling, such a good girl!
The anaesthetist used gas to put her to sleep (my husband held her in his arms whilst this was being done) and then used a block which made her numb from the waist down (helps with post op discomfort apparently).

The op went for 1 ½ hours. During this time my husband and I got a drink from the cafeteria, bought Emma a big balloon and then got our pram and car seat and took them to the ward so the OT’s could modified them if needed. The time went really quickly (thankfully) and before we knew it we were being called to see Emma.
She recovered really well from the anaesthetic, she was a little pale and swollen but otherwise good. She had a bottle as soon as she was awake.

The following day Emma had a MRI to confirm that the hip is in correct position, she screamed in the beginning as the loud banging noise frightened her, but actually fell asleep 5 mins before the end! I was in the room with her. We were discharged after this. Car seat was modified (like Corelly, we had to buy an extension strap $20), pram was ok as is.

Since being home Emma is much more settled, she slept solidly last night despite having nappy changed 3 hourly. Tonight we’ve decided 4hrly should be ok.

Karma1410, I hope our story helps you to prepare for August 11th. I’ll be more than happy to tell you anything else you want to know. The cast is heavier than I expected and was quite awkward to begin with, do you know if your daughter is getting fibreglass or plaster cast? Hope her 1st birthday is a blast. What is a cake smash by the way?! In regards to your post about wanting more questions answered by the surgeon, I would book another appt if it would put your mind at ease.

Corelly, I was told that the cast will only need to be on for 6 weeks not 12, yay! Emma will then most likely go into a Rhino Cruiser

Does anyone know how to put photo's on this site?

Hope everyone is doing great.

[pink_fairy]

So glad to hear everything went well furgurnie! Sounds like you have an amazing little girl. I hope the next 6 weeks go quickly and she (and you!) is coping ok. Was your hospital stay only overnight? We were told 3 nights - perhaps that could be because my DD is older?

We are going through Childrens Hospital at Randwick and our surgeon is Dr Angus Gray, we were referred to him by our Dr who has worked with my mum for around 20 years!

Im back at uni this week and im over it already!!! Hope you all have a great weekend

[furgurnie]

Hi PinkFairy, yeah everything went unbelievably smoothly for us. We really are blessed to have such an easy going little girl. She was a little unsettled at times today but we think it was due to frustration as she can’t kick her legs anymore. She doesn’t seem to be in any pain, but her incision site is a little tender when we brush past it putting her nappy inside the cast.

We were also told our stay would be 2-3 days, but Emma recovered really well and my husband and I were pretty happy and confident with caring for her in the cast so there was no need to be in hospital anymore. The worst part of the whole experience was sharing a room with 3 other babies recovering from surgery, so neither my husband or I got much sleep (not to mention Emma).

What are you studying at uni?

[Miss.September]

Furgurnie - great to hear Emma's surgery went really well. Her surgery sounded exactly like my DD's except we waited a week before we had the MRI. That's fantastic that the cast only needs to be on for six weeks look after your own back in that time, these munchkins get heavy suddenly in these casts! Unfortunately it is against BB guidelines to post photos on here, other than in a signature, but a lot get around it by making facebook friends. I think you can link to your facebook albums or an off-site photo share site, like flickr, but you'd have to ask one of the administrators how. We too stuck by the "rules" with nappy changing for the first few nights, but for us, DD ended up more unsettled after that so we stopped and let her go right through the night. It worked fine for us.

[MummyNaomi]

Hi Everyone and a big welcome to all the new Mums joining the forum

Pink Fairy - How are you going leading up to the surgery, it must be difficult with it getting closer, but I bet you wouldn't mind it to be all over and done with too. Re child care, my DS fortunately came out of his brace a month before he started child care, but the centre told us they have had infants previously with braces and the carers were fine and more than happy to look after the little ones no matter what, glad your centre is supportive I hope DD enjoys her upcoming birthday!

Furgurnie - glad to hear Emma's op went well (and Mum and Dad did well too by the sounds of things). My DS was only ever in a brace and we were very fortunately not having to go through surgery or spica's but nevertheless its an emotional journey isn't it? Agggghhhhhh a hospital room with 3 babies - not the most restful place for poor Emma to recover, glad to hear you got to go home quickly!

Madcat - hehehehe poor DD worried about her legs being chopped off What an adorable munchkin!

Karma - Welcome and like the other parents, I hope you find some support in this forum, I certainly have, especially in the beginning when it was all an emotional blur and we were adjusting to life in a brace etc. I dont think anyone else can truly understand how you are feeling unless they have lived it too. I hope Aug 11 comes (and passes) quickly for you and it all goes smoothly, it will be a tough day no doubt!. Sorry you are still trying to get some questions answered, I cant believe your surgeon cant just take 5 minutes to return your call!! Grrrr

Jackie - good luck for your appt in August. Our orthopedic surgeon was quite conservative also, but now that we are brace free (and all is very well hip wise), I am very glad. My DS was in a brace for 6 months as the angles of his acetabular needing correcting and compared to others in similar situtions it seemed our treatment was quite long, but I guess I'd rather be in the position we are now (HUGE IMPROVEMENT) and we dont have to go back to a check up for 12 months were originally we were expecting 6 monthly xrays so we are very very thankful to our awesome surgeon, so have trust in them What brace is your DD in now?

MummyNaomi, an enormous thank you to you, you are one special lady.

You're a dag Corelly, but I love ya anyway! Like Corelly, I have had HEAPS of support from this forum and now that our journey is over (and hopefully stays that way), I hope I can somehow replay the support by being here for others - and yes Karma, Corelly is a wealth of DDH info

Hope all your bubs are happy and healthy and keeping away from all these winter colds

Naomi

[Miss.September]

LOL Naomi - one of my rare mushy moments :P

[jacksnjeff]

Hi Ladies,

Hope you are all having a lovely start to the weekend. I was until my worst fear became a reality. Just had a spider on my neck. Alot of tears and shaking was involved and thank goodness dh was home. I now have major heebie jeebies. Yuck!

Karma - That is a great attitude to have about the date being set for the 11th. The sooner it is the closer you are to be able to put this all behind you. That was probably the only positive about having our surgery the next day, so I couldn't stew and stress on it. But the major negative as you said is that I couldn't prepare for anything or ask any further questions. That is fantastic that you will be able to have a big 1st birthday celebration prior to casting. Our DD was 1 on the 19th July, but we delayed her party and she will be sharing a big party with her sister who will be turning 4. I am hoping we get good news on the 17th August as their party is 22nd August.

Corelly - Fantastic to hear that your DD is in the all clear. What an amazing feeling that must be for you, your partner and your bubba. With your brace, did they reduce time in it, or go straight from wearing it full time to not wearing it?? I am hoping and praying that next appoint we go to night time only, but am not holding my breath. At our last appoint in May, he got her x-ray up and went though it with us in detail. Her right hip was at least half the size of the left and it was also very obvious the major difference in her left ball joint to her right. I guess I am just worried with how different it was that I am hoping for too much and setting myself up for disappointment. I hate the not knowing, if only I could be told that by the end of AUgust your journey will be over, but I logically know that we are waiting for bone to grow and ossify and no-one knows how long it will take.....

Karma - Sorry I am all over the shop today, but I did feel unprepared for my dd surgery cause that was taken out of my hands. If you could get an appointment I would do that. As Corelly said, write them down and take them with you. My brain goes to mush and I have to write it down to remember what to ask.... It is very frustrating when you do only have a couple of questions that could be answered in minutes and they won't do that. We have never had a CT or an MRI. We have had 2 ultrasounds and 2 x-rays. She also had the arthogram whilst in surgery so that would be another x-ray.

Furgurnie - Fantastic to hear how well everything went with Emma. They are such little troopers aren't they. From a selfish point of view, I sometimes think it is harder on the parents than the kiddies. My DD cast was purple which was a shock. I always just assumed plaster was white. lol That is fantastic to hear that she is sleeping well too. Both my girls have always been fab sleepers, but when Isabelle was in the cast, we were up to her every couple of hours, which unfortunately for us lasted the whole time in the cast and the first couple of nights in the brace. We did try everything but to no avail. I did hear one tip after we came out of the cast and that was to have pillows filled with bean bag balls for the babes to lay on in bed, as it contours to their whole body and supports it where needs be. This may or may not work.... Also great to hear that Emma will only be in the cast for 6 weeks. Woohooooo!!! Hope everything is still going as well as it can.

Pink Fairy - Great to hear you're in Sydney too. We went to The Children's Hospital at Westmead and they were fantastic as I imagine the one at Randwick to be. Goodluck with yours. What date were you booked in for?

MummyNaomi - Thank you for the welcome. Fab to hear that you're at the end of your journey too. I cannot wait to hear those words. I keep telling myself that it is a good thing that he is conservative, but I just want this over. I feel completely cheated with my second bub and feel we and she has missed out on alot. I feel ungreatful saying that, because in the grand scheme I know it could've been sooooo much worse. With your brace, did they gradually reduce time, or did you go straight from full time to nothing?? The brace DD is in is pretty much the Rhino Cruiser but not as thick. I am pretty sure I heard our surgeon say that it is an inhouse design. It is a velcro strap about an inch thick that goes around the waist with an upside down metal V that has an inch thick velcro strap around each thigh. Hope this makes sense.

Hope everyone is enjoying their weekend, it is quite a nice winters day in Sydney.

Warm wishes
Jackie

[jacksnjeff]

OMG, I am so sorry for the essay ladies, didn't realise how long it was....

xx

[Miss.September]

LOL Jacksnjeff! Don't apologise!!!

As for time in the brace - we went from being told it was going to be 8 weeks, and then once we hit that and were told it had to stay on, I think I stopped asking. We had monthly visits after that. When we were told to make changes, first it was allowed to come off for an hour morning and an hour in the afternoon, and for baths. Then, during summer, we were told if we wanted a day at the beach, don't fret, leave it off for as long as we were there. Then when it could come off for good, we had to leave it on for nights for three weeks and then it was OFF FOREVER!!!!!!!!! So it was on from early August to early Feb all up.

[MummyNaomi]

Jackie - Bailey wore his brace 23.5hrs per day - every day for 6 months. We took it off and gave him a bath each day (and had a 30 min swimming lesson once a week in his brace free time but we weren't allowed to paddle his legs or anything - only movement that he made). Then we had an xray when he'd been in the brace for about 5 months and the surgeon said everything was going really well and to take the brace off at the 6 month mark and come back 3 weeks later to be xray'd and see how he was going brace free. So no, unfortunately the time in the brace didn't lessen, it was always the 23.5 hrs. We cheated though, the day we were supposed to take the brace off was a sunday, we took it off a day early so we could enjoy our first weekend brace free - so we were one day short of 6 months.

I know what you mean about feeling cheated, I still feel a bit that way, I'm annoyed and angry that half of my babies first year (and his first xmas and birthday) were spend in the brace. To be honest I think I'll always feel a bit this way. It's unfair and it just plain sucks! And yes, our lot in life could be worse, but you know what, this is the situation we have to deal with and at times it feels like the end of the world. Don't dismiss you feelings, they are completely vaild, and why shouldn't we all wish we had brace free babies with perfect hips? Its not too much to ask. Hang in there babe x

[furgurnie]

Hey guys,

Today was another great day, I am SO happy that things are going good, I just hope it stays this way. My mothers group got together and bought Emma a Lamaze doll and some cute clothes to go over her cast. It’s so lovely to know people care.

Corelly- my back is already aching because of the weight of the cast, need to start doing stretches!! Last night 4 hrly nappy changes went well, but I agree, we will probably get to the stage where she could go all night. I hate going in to wake her, she looks so peaceful! Did you just use newborn nappies inside the cast or a poise pad (or similar) plus nappy overnight? Was the cast pretty tight by the end of her time in it? It’s a pity we can’t put photos up, Emma looks quite cute in her spica! I’m happy for people to look me up on facebook if interested, just search Rebecca van Geyzel.

MummyNaomi thanks for your message, it is an emotional time to know that your child requires treatment to fix their hips. After the 12 month check up, how often will you see the ortho surgeon and for how many years?

Jackie- I agree, this process can be harder on the parents than for the child. Emma seems to have adjusted quite quickly, but it breaks our heart to see her in the cast and not able to sit up, roll over or simply kick her chubby little legs. Yes we are lucky that she is still sleeping well, I don’t cope well at all with no sleep! We use a small pillow with beanbag balls, it does a great job of making her comfy.

[Miss.September]

We used newborn nappies on the inside of the cast with all the tabs cut off with a larger crawler size nappy over the top of the cast. We found that we could actually reach the inner nappy at the back through the top of her cast which made it a lot easier for us to get it into the correct position. The cast got a little bit tighter as she got bigger, but nothing major, she was only in it for five weeks and we didn't have any growth spurts in that time.

[Madcat]

Wow you guys have been busy chatting! Feel like i cant keep up with you all!

Good Luck to Furgurnie, Sounds like you have already left for the operation, sorry i didn't get back to you with an answer to your question earlier.

"Madcat, how long after your daughter's first op did you find out that she needed another? Was she in a lot of pain post op? How long did she stay in hospital for?"

Kira was 9mths when first diagnosed, she had closed reduction and tendonectomy, surgeon said one year later that she may need further ops before she goes to school. It was always in the back of my head at every apptment, fast forward to now, she is 5 and has just had a salter osteotomy. Still not sure if she will need further procedures. When they are small it is hard to project how their hips will look, even one year on, so as parents of kids with DHD we all need to be mentally prepared for the possibility of our lovely ones having surgery. Its a long process, but it is worth every minute to see them being the best they can be. oops go carried away... Um yes she was in quite alot of post op pain, took awhile to work out how much Morphine to give her to keep pain at bay (I nearly took out a couple of nurses in the battle, and i am normally very calm!!) But they did redo the op four days later because bone graft moved out of position, i dont think this helped on the pain scale. we were in hospital a total of eight days.
The best part is: Someone asked Kira if she liked being in hospital, to my shock, she said it was great! She must have blocked out all the yucky bits and only remembers being able to eat as much ice cream and jelly as she wanted!
So as traumatic as it is for us, our little ones seem to have some AWESOME inbuilt coping strategies!!!!!!

Hip Hip Hooray!

[Madcat]

Yep I have totally lost track!

I have just read Furgurnies home from hossy post, Glad everything went beautifully for you, and i hope the next six weeks goes quickly.

[Madcat]

Hey great idea bout facebook, maybe we could set up a group page? It would be so good to put faces to you all.

[liddy105]

Hi everyone,
Olivia has moved from her Pavlik harness and is now in a DB at 8wks old. I feel like we just got used of one brace and now we've got to learn to adapt to this one too. I've noticed that she's getting red marks on the very top of where her thighs meet her bum from the bar but the orthotist said as long as it doesn't look like it's going to break the skin then it's okay. I don't understand, she was only fitted last week and her next check up is in 4 more weeks, I just don't see how it's not going to dig in even more as she grows??? She also rarely sleeps much anymore during they day unless she's lying on my chest and only sleeps for just a few minutes in her bouncer, on her tummy or in her bassinett during the day and I'm really struggling to get anything done.
Does anyone have any suggestions? Sorry for the real downer of a post I hope you're all well xx

[MummyNaomi]

Liddy105 - my DS was in the dennis brown and we found that he ended up with some blisters where the brace cuffs rubbed, one of the girls from this forum suggested using socks - I cut up some adult knee high socks, discard the 'foot' bit and use the long tube bit thats left to put around the brace cuff, as the socks are usually elasticised they should stay on the brace cuffs pretty well - does that make sense?

We also found that we needed to put a rolled up blanket under DSs legs when he was laying down as otherwise his legs were perched in the air a little, and we also used to put a rolled up nappy on one side of him so he wasn't lying completely on his back, he seemed to get a bit uncomfortable and wakeful unless we did that. Also I bought a toddler pillow for him (quite flat) but the extra cushioning seemed to improve his comfort and he slept much better.

The first week he was in the brace was a bit of a shocker for sleep from memory, hopefully Olivia gets used to it soon and starts to sleep a bit more for you